Tale of Placement

Where does one start to tell a story? At the end, where everything is all finally hunky-dory and our lives have really blossomed or at the middle where the world has exploded into a crazy hectic whirlwind or perhaps the beginning when the wheels started to fall off?

Right now, our boys, 17 and nearly 15, have been, thankfully, placed into permanent care and it has been a wonderful healing process for all of us. They are autistic, especially the younger one I call affectionately The Stick Insect and both have extreme challenging behaviour that was threatening and incompatible with maintaining any semblance of sanity within the family.

They started off alright - both normal babies but halfway through their second year (which seems to be a common story nowadays with autism) they went off the rails....both in different ways so it wasn't a case of copycatitis.

Will, the eldest, had a degree in lining up chairs and smashing his head into concrete and through windows. Andrew was a rocker but not of the Elvis genre. Will speaks; Andrew is mute but can scream and sing "Neer Neer"! Will was a glutton with food whereas Andrew starved himself to the point where the paed said that he wouldn't have made the year out if it were not for his life-saving gastrostomy. He had dark rings around his eyes from chronic dehydration and was skeletal. The only thing they had in common was that they were aggressive and incredibly strong.

It wasn't a result of acopia or a lack of willpower on our part. They were made that way! Sometimes the course of autism dictates that, no matter what ingenious strategies you devise, your child will attack you and cause major destruction within your household. You will not be able to function as a normal family and enjoy social outings without an escape or a frenzied biting attack; a dead-drop on the supermarket floor accompanied by screaming. (Number two graduated from a major buggy to a wheelchair with full restraints) Despite this, you must not let them win and rule your lives. You just have to adapt.

Somehow, we managed horse-drawn gypsy caravan holidays and trips on Puffing Billy; trips to Tassie and farming friends at Cape Liptrap. And pass the parcel as each parent took turns watching the Stick Insect continually to make sure he didn't escape and also to do his hourly gt feeds and nappy changes/toiletting.

The only time that I felt utterly shattered was when something catastrophic happened and I was alone at home to deal with it. Like when Will would come home and assault me. He being a HUGE boy in the 98th percentile for growth. At 15, he was nearly 6' tall and 15 stone. King hits, punches and kicks were his forte. I was discovering that there wasn't much info about the collision course of autism, challenging behaviour and puberty (when they shoot up and outgrow you!).

Like those phone calls from the bus company to say that he was going berserk, giving me little time to get the police around from Glen Waverley station! But they did it, screaming into the court with the siren and lights, cutting off Will's barraging entry into the house!

The carers were coming after school on a daily basis as we were a very high needs family....and it was getting to the stage that they were frequently having to restrain them during dangerous outbursts. And both of them were uncontrollable during outbursts. (And to think that they had been such sweet-looking small boys once who didn't interract much) Gosh time flies!

It got to the stage that we built a bungalow with a time-out room that had the lot - reinforced studs in the walls, pretty AMGLAD tiles (with the kids' names on them) lined the walls, a steel-lined door with Lexen observation window (2 sliding bolts) and a skylight. We HAD to do that as we realised that it was better for them to get it out of their collective systems than have big blokey male carers sitting on top of them. I hated that. But they were SO strong and combative. A sort of Jekyll and Hyde with their mood swings. Unpredictable.

We reached a hiatus where Will was dangerous, pulling out knives and threatening us; really physically assaultive (giving David concussion once) - it was really hairy. David even told the case worker that he thought he might find me in a pool of blood when he got home from work. We put him on an urgent placement list and he was uppermost on that (for the eastern region) for six months before a house came up in March 1999. It was wonderful news!

I'll spare you all the details of how we got him into the house......lots of planning with a ruse as well. That's a whole other story. It took him a month to settle down and we had to limit our phone contact with him as we knew he would be begging us to take him back and that was counter-productive. The case worker, wisely, retained familiar agency carers to take him out to the flicks and bowling to keep him amused. He stayed at Ashwood School, with the department picking up the tab for his taxis, as we all knew that two big moves in close proximity would tip him over the edge. I saw him at school regularly, which was neutral territory and David took him on outings....plus we had a phone call schedule for 3 phone calls a week.

Pretty soon, his big room at his Yooralla house started to resemble his former bedroom at home - cardboard skyscapers, Godzilla on a bridge, Lego constructions everywhere...helicopters, railway tracks, jets, cars.......the floor area was just as precarious to negotiate as before.

We bought him a whizzbang Celeron 500 computer to replace the family one that he had lost access to and also a new Canon printer - he's VERY clever with computer games. Also, David's dad had recently died so Will gained a telly and video recorder....plus we bought him a Nintendo 64 to play Monster Truck Madness on. The other clients were lower functioning so he didn't mix with them, preferring the haven of his bedroom. During this transitional period, Will did fly off the handle many times and was a real handful for the staff.

Meanwhile on the home front, we were hoping that the absence of his older brother (the boys had NEVER got on) would mean that Andrew would settle down. But..........he got worse. Andrew went on the urgent list, just like Will.

We had BIST (Behavioural Intervention Support Team) in for Andrew (as we had done with Will)....lots of STAR charts* to fill in which showed the bleeding obvious. It was not our management but a deterioration in Andrew's autism. I had always been aware that autism could be cyclical....it could plateau with no growth in achievements over a long period of time. I knew about pre-puberty and mood swings but I was unaware that you could lose ground significantly and end up with a feral child.

Holly, our little daughter, conceived during a relatively tranquil hiatus within the house, was now the object of Andrew's outbursts also. Even with a carer after school, travelling on the bus home with him, we had to lock her in the bedroom upstairs with some books and toys.....as he went straight for her.

The department knew but it seemed to me that the client came first....Andrew was uncontrollable and needed to go into a house YESTERDAY.

He was attacking other kids on the bus, the chaperone, carers, us.....when he sank his teeth in, you were maimed. Often permanently....like the school aide who nearly had skin grafting. Getting feeds in was hard too - I even wore rubber gloves to protect my hands from those fangs! Did I mention that it takes three adults to contain Andrew?

It was now October 1999 and I was trashed......we had reached the stage where it was him or us - the department knew that things were so desperate that we were planning to leave him at their Box Hill HQ. Respite was upped to the maximum but it didn't make the day-to-day survival any easier. He was, like his brother, on optimum medication - placement was the only solution.

By now I had written to Premier Jeff - no response. We were obviously not good for election propaganda material. (I'm now a cynic.) The election brought in a hung parliament so I started writing to Christine Campbell....and also ringing her electoral office. There were no available houses out there and the change in government had brought in no changes to the Kennett policy that 'no child would be in permanent care'....so we had our back against the wall.

I was starting to crack up....I don't mean go nutty but I was getting teary and desperate. One school morning, I was standing on the nature strip with the carer - and I was getting kicked hard by Andrew and I responded by giving him a slap to his back (not hard) and yelled STOP IT! This action was reported to the powers that be and they found the perfect "out" for his placement - report his mother to Child Protective Services! This would expedite his placement. Now, isn't this a wonderful reflection on how to work the system?

By mid-morning I was crying, thinking that I couldn't go on managing such a strong, out of control autie.....I had so many phone calls to Christine Campbell's office (she was in Parliament that day - so No go) and also to the case worker....finally I just said to them that I couldn't manage him any longer and not to send him home on the bus. The entire process had gone too far and had taken too long. I once heard it said, anecdotally, that the department won't find a permanent placement unless you die or have a nervous breakdown...and I was starting to think that this was true.

Anyway, two carers took Andrew to an emergency respite house, straight from his special school...he stayed there for a few days, then went to his regular respite house for another few days. And within the week, they opened a run-down empty house in East Burwood and put Andrew there with round-the-clock carers. He smashed a few windows and attacked staff. Pretty soon, all the windows in the house were replaced with Lexen! And two security doors were in place. With a time-out room run along the principles of ours! And the case manager (a really wonderful pro-active one too!) acknowledged that he should have been in care a long time ago as they hadn't realised how bad he was. (referring to his challenging behaviour) But, his hands were tied by a shortage of beds.

All this happened in November 1999. When Andrew didn't come home, I felt immediately unburdened. I was in severe burn-out and could hardly get around. Just totally physically and emotionally wrecked. The house had suddenly gone from a whirlwind to just us and Holly. At last, she could get priority. All through the debacle we had made sure that Holly had lots of positive attention. She had lots of socialisation with three year old kinder and also a daycare session per week...just so she could mix with normal peers and have fun out of the house. Somehow, despite the craziness, she came through relatively unscathed.

Very soon after Andrew was placed, Centrelink cut off their health care cards, disability allowances - it was a mess. We had notified them, of course, but they didn't even wait till Andrew had passed beyond the 45 days (or whatever it is now) per year cut-off point. Chop. Gone. I even lost the Family Allowance, which they reinstated three months later after they realised he was a dependent.

It's interesting to note that, if you have a severely disabled child under 16 (who goes into care necessitated by the level of their disability) there is NO payment beyond the Family Allowance. Even if they are fully financially dependent on you.....there is nothing. You have the usual high costs of their disabilities AND their accomodation (not cheap) but no funding.

Maybe, when Andrew turns 15 we can get a part Youth Allowance. Until Will finally got his Disability Support Pension, we had been going financially backwards with their housing costs, individual house petty cash accounts, lots of medications, special school costs, clothing, big dental bills, etc... Centrelink told me that they didn't realise that there was a need until I challenged it! I have gone through my local MP, directly through the late Senator Newman's office (in person) and the SSAT (Social Security Appeal Tribunal). No joy! (The other thing is that, when your child goes into care, you lose state benefit schemes like Making A Difference, Yooralla recreation funding, eligibilty for ID youth activity groups with DHS and Interchange, whose funding is bound by government grants linked to those living at home.)

Returning to the boys, they have come a long way since they left home. With a lot of input, we now have Will staying with us about once per month for weekends with extra stays during holidays. He's doing well. He changed schools to Heatherwood at the beginning of 2000 and hasn't looked back. Will still is very demanding and obsessively nags us ad nauseum about things he wants done or bought (the concept of money eluding him!) so it isn't easy when he bunks here.

Moving him to the house meant that he could no longer try to rule the roost here. I truly believe that familiarity breeds contempt, if you know what I mean! Andrew loves going out in David's Land Rover on outings and also our Thursday night visits to his CRU**. I love to watch he and Holly bouncing on the trampoline or his favourite activity - bear hugs from his dad when he gurgles appreciatively. He can be so delightfully naughty too so somewhere in there are the traits of a regular boy.

Andrew comes to our house fornightly which is a hoot as it is one big inventory check with him searching cupboards and wardrobes, just to ensure that nothing has moved from its place! I even caught him climbing up high in the shed to reach a basket where he had left his ripped up Thomas books! One major event that has really changed the horizon here is that I accidentally became pregnant last year and had a gorgeous baby boy, two days shy of my 47th birthday! He's spot on with his development and it has been the most marvellous thing for everyone, especially Holly who was showing signs of becoming an only child. Not good! The boys like him too. Andrew will pat him on the head when asked to say hello to Lachie. Will really does prefer the labrador puppy! And Holly is all over the baby like a rash.

I can look back over the years when the boys were home and truly acknowledge just how much they have given us as well as the accompanying trauma, because I am a realist. If I had my druthers, I would have delayed their immunisation, as we had linked their acutely retrograde development in their second year to that, way before the issue was raised publicly. I'm a midwife/RCH trained SRN and I don't believe in advocating against immunisation. Holly's was late and staggered and with little Lachie, we have put it on the backburner....for fear of treading the same familiar path. We believe that things happen for a reason and Lachie is one of those miracles.

Our lives have been enriched by the whole experience. And at last, we are one BIG happy family. Placement can be a wonderful thing when the conditions are right even when the timing doesn't synchronise with your child's needs. When the environment is right, the carers are great....then don't be afraid. And remember that old saying - about the noisiest cog getting the most oil - it is dead set right.

(This was published in the September, 2001 edition of Noticeboard, the magazine for the Association for Children with a Disability Inc)